I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Saturday, April 20, 2013

Pediatric Cancer 101: Advice from the trenches

While, I know that most people do not prepare for this, and
I am not thinking that there is a big market for a book titled “What to Expect
When your Child has Cancer,” some might happen upon this early in diagnosis, or
someone else, who has a bit more time to surf the net, might pass it along. I
hope that it helps.These are the
lessons that I would offer at this point. I might offer “Advanced Pediatric Cancer”
at a later date, but I really hope not.

1) Every cancer, and every cancer story, is different.

There are many roads that lead to the pediatric oncology
floor (although most roads, fortunately, never go through that neck of the woods, with LFS, we actually take a freeway there.) How
you got there is different from everyone else.And once there, keep in mind that your child, her cancer, and how she
responds to it, is unique.This may be reassuring, or unsettling,
depending upon what is going on around you.

For example, while my son recovered from surgery for
osteosarcoma at Memorial Sloan Kettering in NYC, he roomed with two different
young men, both who were there for relapse osteosarcoma, which is a very tough
road to be on.We were there, just
trying to heal from the surgery, in order to head back to Ohio and finish some
punishing chemo.The delay troubled me,
and I feared that just like these young men, Brent’s cancer would metastasize.Literally waking up every day to visions of my
greatest worry was very difficult, and these were amazingly kind people.But no matter; no one wants to peek behind
that curtain, literally or figuratively, at that point in treatment.

I repeated to myself, like a rosary, “That is not Brent’s
story.The successes of osteosarcoma are
not parading around this hospital for my emotional benefit.They are out there, living their lives.We will be as well.”It helped some when I would remind myself of
this.But it was still incredibly hard.

Easily, the most detested line in our home is “Everybody is
different.It all depends…”Get used to that line, or some variation of
it.It has become a punch line for us at
this point.But, unfortunately, at a
time when we most wanted something, anything,
to count on, this was the best answer that the doctors could give.And despite my great frustration, and the very
palpable urge in the moment to shake the docs until their teeth rattled and an
answer fell out, I do in fact appreciate their honesty.

Because everyone understands that the big questions like “Will
this chemo work?” warrant this sort of response.However, even seemingly simple questions, like “What side effects should
we expect?”“How long will his recovery
take?” are truly unanswerable, as we soon learned.Eventually, you begin to preface your questions with, “You likely cannot
say but…”When you start doing this
without gritting your teeth and experiencing a rise in blood pressure, you
know that you have become a hem/onc veteran.Lesson one: learned.

2) Telling others

You will have to tell others.In all likelihood, a lot of others.We found Caringbridge to be an indispensible
tool for communicating our journey with friends, family, and coworkers.I do not work outside of the home, but Dan
does, and as exhausting as it was being at the hospital, it was equally
exhausting, emotionally speaking, for Dan to have to repeat the latest events over
and over to his concerned coworkers. Early
on, I had many long, and repetitive conversations with understandably concerned
friends, neighbors and family.

But, when I began to write online about what was going on,
these conversations became shorter, less repetitive, and interestingly, we
actually had more connection with people, many who might otherwise not have
known our struggle.With the most recent
information available about how Brent was doing, the conversations would often start
with a statement like “I was glad to
read that Brent enjoyed a good weekend home” or “I am sorry that you were in
the ER again last night…”

There is fear, I believe, in asking about how things are
going for someone in a health challenge, when you truly do not know.So, this tool has been empowering for the
asker, as well as for us. Others know what kind of conversation that
they are getting themselves into, and proceed accordingly.And with
the feedback we receive, we know that many people are praying for us, rooting
for us, and traveling with us down this road.This has been incredibly encouraging, given how long and bumpy the road
has been.

When I initially had to tell people of our journey, it was a
hard thing to hard to say.Sometimes,
the responses were hard to hear.And
once you child’s appearance is altered, however temporarily (i.e. hair loss);
the questions from the public at large begin.

At the grocery store, for example:

“I know exactly what you are feeling.My grandfather had prostate cancer.”Once I stopped screaming in my head about how
the two are nothing alike, and incomparable at nearly every level (prognosis, age,
treatment requirements, relationship…), I tried to keep in mind the spirit and
intention of the comparison: That cancer is hard and really scary, and you are
not alone.

These are comments made by people, simply trying to relate
to us.Limb threatening osteosarcoma on
your 11-year-old, on the surface, seems to be in a completely different league
from a stranger’s grandpa’s aging prostate.But if it is your prostate, or your people, the fear and the worry is the
same.I tried to focus on that.Besides, if I only opened my mind and heart
to others with limb threatening cancer on their child, well, I would have
very few friends, and very little support.I would be very lonely, indeed.

Another response, one that you might not expect, is the wide
eyed look of a deer in headlights, right before the person in question disappears
from your life altogether.Fortunately
for us, we have not had too terribly much of this, and this has been far
outweighed by people rushing in to help our family, so the loss of such people
who cannot handle this has not been so noticeable.

3) Information, internet and anecdotal evidence

You want to know the latest information about your child’s
cancer. I completely get that.You are
sleepless and scared.Rather than
phoning a friend in the middle of the night, while your child is most hopefully
asleep, but sleep eludes you, you decide to use the free hospital wifi to surf
the net and do some research.

I have had dear friends advise me that “nothing good happens
after midnight.”While this would be
cautionary advice for ordering another round of drinks at a bar, I submit that this
would also be good general advice for internet research as well.While the net offers clarification on information
that maybe you couldn’t quite digest during the day, I cannot caution you
enough about the angst that comes with reading medical information on the
internet without live backup in the form of explanations from your child’s doctors.
Be aware of the site you are on.I would
return to and reread the first section about “every cancer is different.”

Along the same lines, people will share their cancer stories
with you, offer advice that they saw on television or got off of facebook,
however remote or unrelated to your child or their cancer.I would go back to the second section on “telling
others.”They want to relate.What they say does not necessarily
relate.But you have to recognize and
appreciate the effort.

Statistics.I am in
no position to speak about statistics, mostly because I have long ago rejected
them.Having a hideously rare genetic
predisposition to cancer and 3 episodes of pediatric cancer in our nuclear
family to date… well, stats cannot comfort us.So, why should I let them frighten us?Why should I pay any attention to them at all?I had a friend once say of statistics, “Even
if you child has 98% odds in his favor, it is meaningless to you if he is in
the 2%.”Her child had less than 10%
odds, and for the record, is healthy over 5 years out. :)Like they say of politics, it is all local.

4) What can I do?How
can I help?

Latch on to these words.Hug the person who says them.Embrace, and accept this, despite any reservations that you may have.

I had a very hard time with this notion of accepting help.But for my other children, I knew we needed
help.They needed rides to practice.
They needed distractions. They needed to know that they weren’t alone, even though
we would be gone, sometimes for weeks at a time.I had no idea how hard or how long this was
going to be, or how tired I would become.Otherwise, I would have gotten over my hang up about accepting help…much,
much sooner.

Initially, the notion of having meals arrive at the house
from friends and neighbors was hard, because I felt like this would be
surrendering in a way, allowing cancer to change who we were.I was the lady bringing the meals, not receiving
them.What did this mean if I was receiving
them?

But people wanted to help, and in a helpless situation,
where they cannot fix what everyone most wants to be fixed, loved ones can ease
your burdens in other areas. They help with what can be helped.They drove. They cooked. They took my kids on
special dates.They sent Legos and
activities for Brent in hospital. They
sent cards.And I know they prayed….because
they told me about it.I was comforted by
all of this.

It is a long road, with long to do lists, most of which
cannot be delegated.Anything that can
be, allow to be.You have to prioritize
your time, your energy.Let someone else
clean your house if they offer.Or cut
the grass.Or cook, or change your oil.Let them.So that when you
are home, you have the time and the energy to read your child a book, snuggle
close on the couch and watch a movie together, whatever comforts and connects
you.I suspect that cleaning out the
gutters is not included in ‘meaningful time’ at home…so if it is offered,
accept.Gratefully.

And if you are reading this, and want to offer help to a
family in need, try to do the thinking for the family.Show up with your rake, or your snow shovel,
or a casserole that could be frozen for another night. Take the kids to a
movie, or the dog for a walk.Whatever your
talent (or capacity for the mundane) be specific in your offer, because while
we received many very genuine offers of “whatever you need,” I couldn’t think
enough to even see such a need (unless it was a raging fire right in front of
me), much less match it with the person best suited for the task. I was barely
capable of ‘yes’ or ‘no’ responses to specific help offered.

We received gift cards for gas, and pharmacy, and groceries.Even with good insurance, things add up fast,
in ways we didn’t imagine, far beyond me giving up my small business. We received
notices of donations to cancer research, support of cancer organizations in our
name.These were a way for people who
didn’t know us personally, to help support us nonetheless.They were all very meaningful.

5) When it is over, it is not over

For so long, we counted the days until we finished chemo, then
until Brent’s counts recovered…the magic day when we would leave oncology
behind and we would get our life back.I
do not want to be discouraging, but, for the record, your life will never be
the same, and the considerations of cancer continue long past chemo. I am not
saying that you should not look forward to that day, but the change is not as
dramatic as you might imagine, which can be disappointing. There are scans, and
labs and worries and well, just stuff.Brent is now 9 months out from chemo, but we
have yet to go a week where I have not dealt with oncology for some repercussion
of his treatment, and never mind the nonsense that we have for our ‘genetic
concerns.’

Straight up cancer is a long road.But it is much longer than they will tell you
on the day that you get your treatment “roadmap.” I am in no way complaining
about the long road, because the alternative is unimaginable. And if you have ever been on a pediatric oncology
floor, you are very grateful for the opportunity to be tired from a long hard
slog.However, I would recommend re-reading
the section about accepting offers of help at this point.

You will get through this. It will be hard. And horrendously
unpredictable, which is utterly exhausting.But you will find support, probably from unexpected places. And you will
never look at the world in quite the same way. These are the absolute truths I
can offer.Beyond that, as in all things
in life, it is up to you.I send you
love, wishing you health, peaceful moments, and the wisdom found in the
serenity prayer.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.